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Question:
Here is my family history:
When other methods proved ineffective about 4 years ago, I began Tysabri infusions. It has seemingly stopped MS in its tracks. No new visible lesions on yearly MRI's and no new symptoms since beginning Tysabri. When reading the results of the study (as best I could understand), the fact that my mother has Alzheimer's, and her sister and and I both have MS, is not a coincidence and highly suggests a genetic factor on the maternal side of the family? What I fear is that I may have passed a gene on to my 14 year old daughter. Are there any tests or avenues available for early detection of any of the disorders which seem to be related to MS or the like? I attribute my early detection of the disease, and aggressive therapy choices, for minimizing the damaging effects of MS (and I'm sure my more "lucky" genes than those of my neighbor or classmates which have progressive MS). Is there any thing I can do to help protect my daughter, other than making her aware of how critical it is to be cognizant of her body and be very mindful of any changes that may appear to be out of the norm? Any advice/knowledge you could share would certainly be appreciated. I am part of the TOUCH progam which I believe is an ongoing study group through Tysabri which tracks and shares my progress. Is there anything else I could to add and give aide to this large database being created? Answer: Thank you for this thoughtful question. MS certainly has a genetic component to its development and manifestation; however, it isn't a simple genetic pattern, but more complex. There are over 100 "susceptibility" genes that have been identified that are associated with MS. In nearly every instance, these genes are part of the immune system. The "susceptibility" moniker emphasizes that just because an individual has genes associated with the disease, that doesn't mean they will go on to develop MS. In fact, there is evidence that a first degree relative of someone with MS will have a 4% lifetime risk to develop the disease themselves. We suspect that individuals with a certain genetic "load" of these susceptibility genes in addition to a yet to be determined environmental factor(s) triggers the MS disease process. So, genetics is a piece of the puzzle, but not the whole puzzle. Please see the blog on this subject by Dr. Greenberg and Dr. Kinkel: READ MORE If interested, you and your daughter may be eligible to participate in a genetics/epidemiological study on this subject through Brigham and Women's Hospital in Boston, MA: READ MORE A. Scott Nielsen MD MMSc Virginia Mason Multiple Sclerosis Center We have been working on this a long time and taking your input and we are pleased to announce that MS HealthAllies is now ready for you to test out! Click here to find out more LEARN MORE Don't forget to watch the "How It Works" video and please let us know any feedback you might have! This FREE service is for people with MS, caregivers, family and friends. Please pass this along to others. Enjoy! http://www.mshealthallies.com/ Question:
Hello! I read the book The Brain's way of Healing by Norman Doidge and I am curious to know when the PoNS (Portable Neuromodulation Stimulator) will be introduce? Do you know? It stimulates neuroplasticity as you probably know. I have had PPMS now for a couple of years and only improve a lot thanks to my trainings with neuroplasticity as a base. I think with this device I can even improve more! Thanks for your response! Answer: Neuromodulation rests on the theory that electrical stimulation of the nervous system following injury,either directly or through peripheral nerve inputs, can enhance recovery of function by promoted synaptic connections. The portable neuromodulation stimulator or PoNS is a device that electrically stimulates the tongue and is used in combination with standard rehabilitative techniques. The investigators propose that the device enhanced cerebellar function through inputs from the 5th and 7th cranial nerve. There is preliminary evidence of some benefit but there are many neuroscientists who contend these benefits reflects flaws in the study design. The company making the devise hopes to have it on the market by 2016. Please see the following article on the devise written by the MS Discovery Forum: http://www.msdiscovery.org/news/new_findings/12335-portable-neuromodulation-device-may-improve-walking-ms-patients Here is My Question:
I have severe leg weakness following a left femur fracture 6 months ago. I want to start physical therapy soon to help me walk better in my walker. I mainly use a wheelchair now. Before the accident I did not have a wheelchair. What kind of shoes should I have for PT? My doctor said I will walk again but I have to help myself. I have had MS for 15 ears and am 67 years young. I want so to improve my life. Thank you, lynn Answer: So glad to hear that you are starting physical therapy and are motivated to help yourself! Sarah Wargo DPT, MSCS at the Mandell Center for Multiple Sclerosis says that sneakers would be best. This will allow you to participate in any standing or walking activities with good foot support and traction on the floor. Additionally, it will allow the therapist to trial any type of assistive bracing that may be beneficial to assist with walking. If possible, please see a physical therapist that has experience with people that have multiple sclerosis.
Here is a blog with some information on physical therapists for MS. READ MORE Good luck and keep us posted on your progress!  Here is My Question:
I HAVE TROUBLE GETTING IN AND OUT OF MY CAR. I have a Toyota 4Runner. Any suggestions? We checked with Eric Lajeunesse who is a mobility consultant at Ride-Away Corporation and he said that Adapt Solutions has a product called the XL Seat that can be installed in a 2003 – present Toyota 4Runner in the driver’s position that may help. The link to see pictures and information on this product is http://adaptsolutions.ca/products/index.php?prd=2&ftr=1. Eric said that his company has installed a few of these and they have had good feedback. Hope this helps and if you have any more questions you can call Eric (See contact information below) Eric Lajeunesse Mobility Consultant Ride-Away Corporation (603)437-4444 elajeunesse@ride-away.com  Question:
Any suggestions how to deal with dizziness, I have it more times than not. I do take diazepam but it doesn't always work and makes me very tired. Any therapy or exercises? I do have PML. Thank You Answer: Chronic dizziness is a difficult symptom to treat in people with MS. It is often caused by problems with vestibulocerebellar pathways in the brainstem and cerebellum and not caused by problems with the inner ear. This may sound like Greek, but it simply means that the dizziness rarely responds to vestibular rehabilitation with a trained physical therapists. The first step is to make sure the dizziness is central in origin (not caused by involvement of the inner ear or the nerve to the inner ear). Your neurologist should be able to determine this for you or refer you to a dizziness specialist. If the dizziness is peripheral, you should be going through vestibular rehabilitation with a trained physical therapist and avoid vestibular suppressants unless needed. If you have central dizziness, it is important to treat the associated symptoms (like oscillopsia or constant movement of the environment and severe imbalance with falling). For the sensation of dizziness diazepam is great vestibular suppressant but must be used in small doses as you’ve discovered. I usually prescribe 1 to 2 mg doses taking twice a day or three times a day. If this is not affective or too sedating, other low dose benzodiazepines like Lorazepam (0.25 to 0.5 mg) or clonazepam (0.25 to 0.5 mg) often work well and cause less sedation. Other drugs occasionally beneficial include low dose meclizine, zofran (especially if associated with nausea), gabapentin, memantine and amitriptyline depending on the circumstances. Rip Kinkel MD Director of the UCSD Multiple Sclerosis Program Question:
MS has been a part of my life for 28 years. I have tried numerous medications - Copaxone, Gilenya, Tecfidera, Tysabri, Immuran, and, most recently, Plegridy. And had adverse reactions to each. Some more severe than others. I have RR MS, am still mobile and active but have noticed a little more progression of late with some symptoms. Is there a common denominator with MS drugs that may be the root of these reactions. I feel as if I am playing Russian Roulette not taking some medication, but feel the same way with each new nedication. Help! Thank you. Answer: I hope that by the time you finish reading my response to your question, you will realize that "Russian Roulette" is a very bad analogy for your predicament. While I do not know all the details of your case, I do know the natural history of MS and can provide a framework for your consideration. If you are a typical MS patient with relapsing MS for 28 years, you should be a woman somewhere between the age of 50 and 65. I will also assume that you have few other physical or mental problems for the purposes of my comments ,since additional health concerns can significantly affect your functional status. The median time from onset of MS (your first symptoms) to the development of secondary progressive MS is approximately 20 years in most modern natural history studies (Lyon France 1976-1997: British Columbia 1980-2003; and Lorraine France 1996-2003). This means that you are doing way better than the average MS patient if you have relapsing MS after 28 years. In the London Ontario natural history study, 80 % of patients with a relapsing onset were classified as progressive disease within 20 years of onset. Again this would indicate that you are doing very well indeed. Since the point at which a person develops progressive disease is often unclear, we often look to these natural history studies to tell us when people with MS tend to reach certain disability milestones. A common milestone for this purpose is the point at which a person requires at least a cane to walk and never improves again to walking without at least a cane. Now many people use canes for safety and reassurance, but for the purposes of this definition we are literally talking about people who can not walk the length of a football field without a cane. All of these natural history studies indicate that the median time to requiring a cane for walking ranges from 23 to 30 years after onset of MS symptoms. By this definition you are also doing very well. Now why is this information important to you in your decision about treatments? First, you already know you are doing considerably better that the average patient. You state you are still mobile and active. This indicates that your Expanded Disability Scale Score is probably no greater than 3.0. If this is the case you are doing better than at least 80 % of other people with MS and may never develop significant disability. If this is the case, you may never require disease modifying therapy. Why then are your symptoms worsening? Without knowing the details, I can not answer this question, but it is quite possible (based on the information provided and discussed above) that your increase in symptoms is NOT related to disease progression. The increase in symptoms could be related to other conditions (mental and physical), medications, deconditioning or simply the combination of normal aging on top of a brain already affected by MS. I suspect it is time to take a more holistic view of your overall condition and take a complementary approach to management that may or may not involve a disease modifying therapy. Discuss this with your MS specialist and feel free to share more of the details of your condition. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program  We have been working on this a long time with MS specialists and clinics and patients across the country and we are pleased to present the MS HealthCare Journey! This FREE service (we only ask that you register with us, and note that we do not sell, share, or distribute your information as your privacy is important to us) is offered so that people with MS have a 'how to' for managing their own MS journey.
We have worked very hard on this and do we still have a long way to go? Yes. This will be a work in progress as we continue to find the best resources and tools for you to utilize on your journey. We will continue to share this with clinics and gain their advice and expertise to make this service the best it can be. Feel free to share it with your healthcare providers and get their input. Let us know any feedback you or they might have! So please check out the MS HEALTHCARE JOURNEY and let us know what you think! Pass it on to any MS groups you might belong to so they can utilize it as well. Thank you! Best, Christine Granfield CEO of HealthCare Journey  Question:
I read a blog you posted about memory and cognition for people with multiple sclerosis. Any tips on exactly what to do? Like what are things I should be doing everyday to help my brain? Answer: Here are some ideas:
Lori Kostich M.S. CCC-SLP, MSCS Mandell Center for Multiple Sclerosis #multiplesclerosis #memory #cognition #MS Here is My Question:
My son is two years old and has been diagnosed with MS. He has 2 lesions on the spin and 9 Oligoclonal bands, but yet his doctor hasn't started him on MS medications. He gets IVIG (12g) every 3 weeks and solumedrol (30mg) every week... What are your thoughts? Answer: There are no approved therapies for pediatric MS, because they have not been adequately studied. It is hard to make specific recommendations without knowing the details of a case. IVIG has been used in the past with variable success. Many clinics have used therapies that are FDA approved for adults in children this young, but there are a lot of variables that go into this decision. With rare diseases like pediatric MS, we always recommend seeking formal second opinions if there are unanswered questions. Benjamin M. Greenberg, MD, MHS Director, Transverse Myelitis and Neuromyelitis Optica Program Director, Pediatric Demyelinating Disease Program Department of Neurology and Neurotherapeutics Department of Pediatrics Cain-Denius Scholar of Mobility Disorders University of Texas Southwestern Medical Center Here is My Question:
I am a 53 year old otherwise healthy and active woman with a 3 year history of episodic vertigo. My 1st episode was in 11/2011. The episodes occur 3-4 times per year and last from 3-6 days. Some episodes are minor but the worst ones leave me vomiting from motion sickness. I have had 4 MRI's all showing multiple white matter lesions but without significant progression (last 4/2014). I have no other risk factors or reason for the lesions (not hypertensive, etc.) I am without a diagnosis. My neuro exam is normal. I have had 2 LPs, first one showed 1 oligoclonal band, the repeat was negative. Recently I feel that my memory is deteriorating and I have trouble multi-tasking. I also recently had one of the worst episodes of vertigo. I really just want to know what is wrong with me. My physician has discussed the possibility of MS but doesn't feel that there is enough information to make such an awful diagnosis. I am also a very active person, a former competetive runner. And i don't think that he feels that anyone with MS could possibly do what I do. Should I get a second opinion or should I just wait for something else to happen. thank you for any advice or guidance. Answer: It seems that you will benefit from a second opinion at a local MS Center. Your symptoms could be secondary to MS but other diagnoses have to be explored. Augusto Miravalle MD Associate Professor of Neurology Vice Chair, Section of Medical Education Director, Neurology Residency Program University of Colorado Denver School of Medicine Question:
My daughter has had MS for 20 years. She has been on Tysabri for almost 5 years. She was diagnosed with JVC granular cell neuropathy of the cerebellum in September 2014. Her spinal copies were 267. As of feb 2015 they were at 58. Could someone please explain to us in plain English how do we know when this infection is gone? My daughter is tired all the time. How hard should she push herself to do everyday things? Her symptoms are numerous and she doesn't seem to be improving. Does the cerebellum once compromised repair itself? Are their symptoms that indicate we need to be even more worried that something is really wrong or that we could be facing death if not treated? Right now my daughter is on no maintance drugs for her MS. I am really concerned about this but should I be? Lastly is there any layman phamplets or literature you could direct me to. We do have an excellent MS doctor but he is not an expert on this mutant gene of JVC and therefore consults with other doctors. My daughter is on her 7th month of this virus and we are all concerned. Thank you. Answer: We are very sorry to hear about your daughter's diagnosis. You seem very knowledgeable about her particular condition but let us provide some general information that may benefit other readers and answer your specific question. The John Cunningham Virus (JCV) is ubiquitous (meaning it exists everywhere in the world), only infects humans and does not appear to cause any primary illness when a person gets infected. The number of people infected with this virus varies from study to study, but most studies suggest that more than 80 % of all people are infected with this virus. Following infection the JCV remains asymptomatic in the bone marrow and kidneys (whether or not you have MS). Some people produce detectable antibodies after infection with the JC virus infection, whereas others do not. The present or absence of antibodies to the JC virus using the current assay available for MS patients, does not indicate whether you have a latent or prior infection with the JC virus, but it does indicate your risk of developing a productive JCV infection of the nervous system, if you are receiving treatment with Tysabri. Due to reasons that are not entirely clear, people who are immunosuppressed and people who are receiving certain treatments, particularly natalizumab, may experience a productive infection of the central nervous system by the JC virus. For this to occur, one or more genes expressed by the virus must become mutated to cause the infection in the brain. What causes the mutations, allows the virus to be transported to the nervous system so that an infection may develop, and allows the virus to enter brain cells not normally infected by the original virus (called the archetypal strain) and reproduce remains unclear at this time. The most common central nervous system infection by a mutated JC Virus is called Progressive Multifocal Leukoencephalopathy (PML). This is an infection of the oligodendrocytes that make myelin in the brain. It is this same myelin that is the target of inflammation in MS. Therefore, the initial symptoms of PML can be confused with worsening of MS and the diagnosis of PML requires a high degree of vigilance. Less commonly, the mutated virus can infect the granule cell neurons in the cerebellum and cause a condition called JCV granule cell neuronopathy. This condition does not directly affect oligodendrocytes or myelin and can be very difficult to detect since patients experience a progressive shrinkage of the cerebellar cortex without the white matter changes typically associated with PML on MRI scans. MRI is very good at detecting changes in the white matter of the brain (such as MS and PML) but not as good at detecting changes in the cortex or gray matter (such JCV granule cell neuronopathy). In some cases people present with both typical PML and Granule cell neuropathy of the cerebellum making it easier to establish a diagnosis. The symptoms of JCV granule cell neuronopathy usually include progressive unsteadiness walking (called ataxia or walking like a drunk), slurred slow speech with loss of normal rhythm (called dysarthria) and incoordination of movements. While these same symptoms can be caused by MS, their development or worsening in an otherwise stable MS patient on long term Tysabri therapy is reason to suspect JCV granule cell neuronopathy. To date, there have been over 130,000 individuals throughout the world that have been exposed to Tysabri. The overwhelming majority of patients with JCV related nervous system infections are reported as PML although it is likely that other JCV related conditions like JCV granule cell neuronopathy may go undetected or misdiagnosed. Once a Tysabri treated patient develops PML, there is a 23% mortality rate, and the other 77% of patients survive the infection but are left with varying levels of disability. In some cases the virus is eliminated and no longer detected after the immune response is restored (read below). In other cases like your daughter, the virus remains detectable in low amounts for variable periods of time because of partial viral clearance by the immune system response. In this case the condition becomes chronic much like the underlying multiple sclerosis. Physical/Occupational therapy may be indicated to help facilitate some functional recovery. Your doctors can help direct this when it is most appropriate. We know far less about the outcomes of people with MS who develop JCV granule cell neuritis as there are very few reported cases. When PML occurs on Tysabri treatment, the generally accepted strategy to manage this situation is to remove the Tysabri from the patient by using plasma exchange (this is a procedure that filters the blood, removing the Tysabri). This is done in a hospital setting. The rationale for this is to remove the blockade of white blood cells from the nervous system (so they can get into this space and fight off the infection). Following plasma exchange the patient often develops a strong inflammatory response against the infected brain that worsens their condition and is usually controlled with steroid treatment. This is call an Immune Response Inflammatory Syndrome or IRIS. Unfortunately, there is no proven additional therapy that can eradicate the virus. Therefore, we rely on the strength of the immune system to clear the virus. Periodic testing of the spinal fluid is important to prove that the immune system has successfully cleared the virus. To answer your question about a disease modifying therapy to treat your daughter's MS: we would agree with your daughter's treating physician not to treat at this point in time as she still has copies of the virus in her spinal fluid. From your message, we suspect that the MS doctor appropriately has an infectious disease specialist helping in the medical care of your daughter and her PML. The world’s expert on your daughter’s condition (JCV granule cell neuronopathy) is a former colleague at Beth Israel Deaconess Medical Center in Boston, Dr Igor Koralnik. I would suggest that your daughter's doctor contact Igor for advice on management, if they have not already done so. Revere Kinkel MD and A. Scott Nielsen MD MMSc Here is My Question:
My latest JCV came back positive at a level of 2.93 - I have been on Tysabri since the phase 3 trials (minus the year they took it off the market in 2005?) - I have done and am doing really well on Tysabri...my level has been around that for the last several blood draws...as I am doing so well - and am probably the healthiest I have ever been in my life - should I consider "Rituxan"? Doesn't it also carry a slightly lower risk of PML? Answer: This is an excellent question but difficult to answer. You have a number of options. First, your risk of PML if you remain on monthly treatment with Tysabri is approximately 1 in 100 or 1 %. You and your doctor know more than I do about the benefits you have received from Tysabri treatment for the past 9-10 years and your risk factors for MS disease progression, so the two of you need to decide if your treatment should be modified based on your overall assessment. There are several factors that may affect your decision. First, people with a low body mass index or weight accumulate more Tysabri over time and may be at increased risk of PML. This is particular true of people less than 60 kg. If you are relatively thin I would strongly consider increasing the interval between Tysabri infusions to every 8 weeks instead of every 4 weeks. There is accumulating evidence that this is beneficial in all JCV antibody positive (high titer) patients but particularly in those who are thin. I currently treat monthly for the first 18 treatments and then every 8 weeks in all MS patients with a JCV antibody index > 0.6. With few exceptions this interval works well but in some cases we need to infuse every 6 weeks to avoid a return of annoying MS symptoms. Another strategy would be to switch to another disease modifying therapy that you are likely to tolerate. This strategy can be beneficial, depending on your prior treatment experiences before starting Tysabri and your disease risk factors but is not without risk. Some people experience significant MS relapses after stopping Tysabri, even if another treatment is started immediately. Furthermore, some of the treatments you may consider could be associated with PML as well, including Gilenya, Tecfidera and Rituximab. The safest drugs to switch to would be the inteferons or Copaxone, but these may not be as well tolerated or as effective. Aubagio has not yet been associated with PML but this may just be due to too little experience. We do not recommend drugs on this site, but are simply providing you with information to discuss with your physician to make the best decision for you. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program Question:
Is it safe to get an MRI with contrast while I have a tooth infection? My dentist said I need a root canal - based on a test on my teeth and cold sensitivity. I had facial numbness and went on an antibiotic. Two days later the facial numbness decreased dramatically. My neurologist wants an MRI but I don't know if it's better to do it before or after the root canal. Answer: A root canal will not affect your ability to get an MRI. Good luck. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program PLEASE NOTE: The information/opinions on this site should be used as an information resource only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.  Question: After a flare-up I had, I've been getting weakness on arms and legs. Will this ever go away? Answer: Weakness or any symptoms that emerged with a relapse take time to resolve. Most of the improvement occurs during the first 3 months following a relapse, but further improvement can occur for up to a year. These rehabilitation measures can help you maximize your recovery. Below are some pages from this website and blogs that discuss weakness in arms and legs and strategies for gaining strength back. Finding a physical therapist who has experience in working with people that have multiple sclerosis is important, and the "PT Blog" listed below can help you find one in your area. Revere (Rip) Kinkel MD
Director of the UCSD Multiple Sclerosis Program We have received many questions about memory...here is a great piece written by Lori Kostich, M.S. CCC-SLP who is a speech-language pathologist working at the Mandell Center for Multiple Sclerosis. READ MORE
Question:
I have heard of possibly treating unrelenting fatigue with a one-time treatment with one of the interferon drugs. What's the scoop on that? Any other insights on debilitating fatigue - I've already eliminated carbs from my diet and eat really clean... Thanks! Answer: A single treatment with interferon will not benefit MS related fatigue. If this were the case, patients would be pounding on our doors to get started on interferons. In most cases interferon treatment transiently increases the level of fatigue. Long term treatment with interferons may benefit fatigue, but the data on this topic is inconclusive and not overwhelming. In the meantime, please search on 'fatigue' in the upper right corner of this page and you will see many blogs and resources regarding fatigue. We also have an entire page on this website regarding fatigue READ MORE Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program There is no reason to believe they could not be used together. Further studies will be needed to determine if VLA-4 blockade by the monoclonal antibody Tysabri interferes with the ability of an anti-Lingo antibody reaching it’s target in the nervous system.
Rip Kinkel MD Here is My Question:
Can MS patients on Copaxone have laser eye surgery. Answer: Yes, none of the DMTs would interfere with lasik eye surgery. We answered this question for you a while back, but in case you missed it, here is a blog with more information and while it talks about Tysabri and lasik surgery it also states that "The one thing that would not prevent you from having lasik surgery is treatment with Tysabri or any of the other disease modifying therapies for MS. The exceptions to this rule would recent treatment with chemotherapy (cyclophosphamide and mitoxantrone) and steroids (solumedrol, methylprednisolone, prednisone); I would recommend being off chemotherapy and steroids for at least 6 months before considering lasik surgery." READ MORE Rip Kinkel MD |
PLEASE NOTE: This information/opinions on this site should be used as an information source only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
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